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		<title>Crazy Angry</title>
		<link>http://momanddadcare.wordpress.com/2012/01/30/crazy-angry/</link>
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		<pubDate>Tue, 31 Jan 2012 00:00:17 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
				<category><![CDATA[Posts]]></category>
		<category><![CDATA[elder care]]></category>
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		<guid isPermaLink="false">https://momanddadcare.wordpress.com/?p=1365</guid>
		<description><![CDATA[Today set me over the edge. Mom is in incredible pain every night from the neuropathy. Her primary care physician won&#8217;t prescribe anything for the pain, saying the neurologist should do it. The neurologist is on vacation for several weeks and there is no doctor covering. Neither office will call me or the facility back. [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1365&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>Today set me over the edge. Mom is in incredible pain every night from the neuropathy. Her primary care physician won&#8217;t prescribe anything for the pain, saying the neurologist should do it. The neurologist is on vacation for several weeks and there is no doctor covering. Neither office will call me or the facility back. She&#8217;s in agony each night and neither one of them is sleeping. </p>
<p>She&#8217;s in tears each time I talk to her. </p>
<p>Me? I&#8217;m just seething, trying to make calls to doctors in between interviewing for a new job and negotiating a severance package from my current one </p>
<p>Infuriating. Overwhelming. </p>
<p>Mom won&#8217;t go to the hospital because she doesn&#8217;t want my father to sit in the ER with her for hours. He&#8217;s also not feeling well.</p>
<p>She won&#8217;t call my sister either. &#8220;She can&#8217;t do that with all she has on her plate.&#8221; Begged me not to fly down, which I&#8217;m not even considering!</p>
<p>Helpless, angry and on the edge. </p>
<p>Get creative, I thought. </p>
<p>So, I texted my sister. Sometimes it DOES pay to have an addict in the family. </p>
<p>&#8220;What would you do to get more meds?&#8221;</p>
<p>For once, she was useful. </p>
<p>Play to her strengths, I guess. </p>
<p>I called the emergency number for the doctor. A doctor from the practice who didn&#8217;t know my mom called me back. I explained she was in dire pain and that he needed to call the facility to change the orders and up the Percocet for tonight. He did. I will fight the rest of the battle tomorrow. </p>
<p>Leave it to an addict to figure out how to get more pills.</p>
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		<title>The Absentee Blogger Returns-I Fear This is Defining Me</title>
		<link>http://momanddadcare.wordpress.com/2012/01/28/the-absentee-blogger-returns-i-fear-this-is-defining-me/</link>
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		<pubDate>Sat, 28 Jan 2012 14:46:11 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
				<category><![CDATA[Posts]]></category>
		<category><![CDATA[Alzheimer's Disease]]></category>
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		<guid isPermaLink="false">http://momanddadcare.wordpress.com/?p=1272</guid>
		<description><![CDATA[It has been months since my last post that wasn&#8217;t a news item. In that time, I&#8217;ve been to visit my parents monthly and have come back overwhelmed each time&#8211;unable to write and relive the experience. In that time, the decline has been steep. My mom is no longer mobile. She relies on a scooter [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1272&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><img src="http://momanddadcare.files.wordpress.com/2012/01/elder_care.jpg?w=497" alt="" title="elder_care"   class="aligncenter size-full wp-image-1276" /></p>
<p>It has been months since my last post that wasn&#8217;t a news item. </p>
<p>In that time, I&#8217;ve been to visit my parents monthly and have come back overwhelmed each time&#8211;unable to write and relive the experience.</p>
<p>In that time, the decline has been steep. </p>
<p>My mom is no longer mobile. She relies on a scooter and wheelchair. It takes three people to move her (or one of me when I&#8217;m there, and I can no longer do it out of fear of divorce based on an injury I suffered last time I was there). </p>
<p>My dad&#8217;s Alzheimer&#8217;s seems a bit worse, but his anger and frustration is MUCH worse. It is aimed at my mom, the staff of their assisted living facility, my sister or anyone else who will listen. It can go off from any little thing like there being no bananas in the morning (&#8220;There are NO FUCKING bananas.&#8221;), to his frustration with my mom&#8217;s situation and their declining situation in general. </p>
<p>It sucks for them both.</p>
<p>I have taught my dad to Skype, which has had some unfortunate consequences.</p>
<p>Mom was in the hospital and a rehab facility for 6 weeks and he was on his own in the facility. We skyped each day. I happened to be traveling at the time and we skyped one day from Paris. Apparently Dad had had an &#8220;accident&#8221; not making it to the bathroom in time. Of course, he answered the phone anyway and when I suggested he call me back, he forgot to turn off the camera. </p>
<p>Let&#8217;s just say that Dad can still clean up after himself. </p>
<p>I just didn&#8217;t need to see it.</p>
<p>Hysterically funny and horrifically sad at the same time. I&#8217;d rather laugh.<br />
<img src="http://momanddadcare.files.wordpress.com/2012/01/elder-porch-pic.jpg?w=497" alt="" title="elder-porch-pic"   class="alignleft size-full wp-image-1277" /><br />
Advocacy has become an even larger portion of what I do and now involves 16 calls a day to caregivers, doctors, nurses, insurance companies, etc. I don&#8217;t know who people survive and don&#8217;t get screwed without an advocate. </p>
<p>The amount of money that must be lost is staggering. I have caught billing errors from Doctors, reimbursement errors from Medicare, Insurance Companies, etc, that totaled thousands of dollars. What happens to the people who have no one to check?</p>
<p>My sibling continues to play a minor role and is dealing with her own issues. I can&#8217;t be angry with her, but I will always be resentful. Always, as in for the rest of my life.</p>
<p>The staff sees it and has commented on it calling her &#8220;a piece of work&#8221;. They jokingly ask if she is seeing my husband as a therapist and tell me she puts a Capita D in Dysfunctional.</p>
<p>The nurses&#8217; attitude towards my parents have decidedly changed since their decline, and I&#8217;ve had to address it with the management. I&#8217;ll be the first to admit how difficult they are, and that my dad is angry.</p>
<p>For my entire life, I&#8217;ve always wondered if my mom&#8217;s behavior was due to a diabetic reaction or she was just being herself. Now they see it too.</p>
<p>By the way, most of the time, she&#8217;s just being her difficult self.</p>
<p>When I lost it on the staff last visit, they know it was serious, telling me: &#8220;we&#8217;ve never seen you without a smile. Every parent should be blessed with a son like you.&#8221;</p>
<p>I walked away, cried and said to myself: &#8220;No. Every parent should be blessed with two children like that.&#8221;<br />
<img src="http://momanddadcare.files.wordpress.com/2012/01/how-to-become-an-elder-care-provider-agent.jpg?w=497" alt="" title="Road Sign"   class="alignright size-full wp-image-1278" /><br />
They&#8217;ve let me know in no uncertain terms&#8211;both separately and together&#8211;that they don&#8217;tDon&#8217;t like where they live. &#8220;It&#8217;s Not Home,&#8221; they say. It cuts like a knife each time they say it. And yet I know that one or both of them would be dead if they still were &#8220;home.&#8221;</p>
<p>No one would be checking in on them. No one would be handling their finances, and no one would be doing checks and balances with their health care providers. Just last week, my mom&#8217;s neurologist wrote orders incorrectly for a treatment she is receiving for her neuropathy. This is the same doctor who in his report made note of my mom&#8217;s  Type 2 Diabetes. There&#8217;s a vast difference between Type 2 (usually Adult Onset having more to do with diet and excercise) Diabetes and the Type 1 Juvenile Diabetes my mom has had since 1946.</p>
<p>The doctors keep saying she mystifies them and they&#8217;ve never seen anything like it. There&#8217;s a good reason. There just aren&#8217;t that many Type 1 Diabetics around. Thankfully life expectancy from diagnosis is different today, but back then, Type 1 diabetics weren&#8217;t expected to live into their 60s, much less nearly 80. For a doctor to make that error is beyond incomprehensible.  </p>
<p>Every day is a fight&#8211;fighting for care, fighting for medication, fighting with incompetent care providers who either prescribe the wrong things, aren&#8217;t responsive or are dumb and lazy.</p>
<p>My life has turned into 16 calls a day from Area Code 239. For my birthday tomorrow, I want my partner to handle all 239 calls.</p>
<p>He&#8217;s been amazing, but I fear this is defining me and taking time and love away from him. </p>
<p><img src="http://momanddadcare.files.wordpress.com/2012/01/senior_care_070910_mn_1_-300x225.jpg?w=497" alt="" title="senior_care_070910_mn_1_-300x225"   class="aligncenter size-full wp-image-1279" /></p>
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			<media:title type="html">Butch</media:title>
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		<title>Nursing Home Investigation Finds Errors by Druggists</title>
		<link>http://momanddadcare.wordpress.com/2012/01/27/nursing-home-investigation-finds-errors-by-druggists/</link>
		<comments>http://momanddadcare.wordpress.com/2012/01/27/nursing-home-investigation-finds-errors-by-druggists/#comments</comments>
		<pubDate>Fri, 27 Jan 2012 19:31:09 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
				<category><![CDATA[In The News]]></category>
		<category><![CDATA[assisted living]]></category>
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		<guid isPermaLink="false">http://momanddadcare.wordpress.com/?p=1351</guid>
		<description><![CDATA[By LAURIE UDESKY Published: January 27, 2012 A woman with a medical history of seizures was prescribed the antipsychotic drug Seroquel, despite research showing that elderly people who take antipsychotic drugs are more likely to experience seizures. She was also given the antidepressant Trazodone, which has been linked to an increase in seizures among older [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1351&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.nytimes.com/2012/01/27/health/nursing-homes-in-california-confront-pharmacists-errors.html?tntemail1=y&amp;_r=1&amp;emc=tnt&amp;pagewanted=all"><a href="http://www.nytimes.com/2012/01/27/health/nursing-homes-in-california-confront-pharmacists-errors.html?tntemail1=y&amp;_r=1&amp;emc=tnt&amp;pagewanted=all"><strong>By LAURIE UDESKY<br />
Published: January 27, 2012</strong><em></p>
<p>A woman with a medical history of seizures was prescribed the antipsychotic drug Seroquel, despite research showing that elderly people who take antipsychotic drugs are more likely to experience seizures. She was also given the antidepressant Trazodone, which has been linked to an increase in seizures among older patients. And then, according to a recent investigation by the California Department of Public Health, the woman was given a second antipsychotic drug, Risperdal. The combination of the two antipsychotic medications, the investigators said, could cause “life-threatening arrhythmias (irregular heartbeats).”</p>
<p><div id="attachment_1352" class="wp-caption alignleft" style="width: 200px"><a href="http://momanddadcare.wordpress.com/2012/01/27/nursing-home-investigation-finds-errors-by-druggists/27bcdrugs1-articleinline/" rel="attachment wp-att-1352"><img src="http://momanddadcare.files.wordpress.com/2012/01/27bcdrugs1-articleinline.jpg?w=497" alt="" title="27BCDRUGS1-articleInline"   class="size-full wp-image-1352" /></a><p class="wp-caption-text">Martin Titcomb with his wife, Lydia, in a residential care home in San Bruno. He has Parkinson&#039;s, and he now takes Seroquel safely.</p></div>Despite these potentially dangerous side effects, the pharmacist responsible for reviewing the prescriptions of the woman, a resident of the Greenhills Manor nursing home in Campbell, told state investigators that he had not noted these irregularities or addressed them in the patient’s chart.</p>
<p>Pharmacists responsible for reviewing the medication of patients in California nursing homes routinely allowed inappropriate and potentially lethal prescriptions of antipsychotic medications, and failed to correct other potentially dangerous drug irregularities, according to recent state investigations.</p>
<p>In reports obtained by The Bay Citizen, the department found that in 18 of the 32 investigations conducted in California nursing homes between May 2010 and June 2011 — 17 of the 32 were in the Bay Area — pharmacists failed to red-flag cases in which residents were inappropriately prescribed powerful antipsychotic medications like Seroquel, a drug used to treat schizophrenia. Pharmacists also overlooked or approved cases in which medications were prescribed at questionable levels or in unsafe combinations that could put patients at risk of seizures, accidents or even death, according to the public health department.</p>
<p>“The consultant pharmacists’ review, which is intended to identify unnecessary or potentially inappropriate drugs among nursing home residents, is defective in the state of California,” said Dr. Jonathan Evans, a geriatrician and the vice president of the American Medical Directors Association. He called the problem “widespread.”</p>
<p>The state investigations also suggested a “probable correlation” between the inadequate review of nursing home patients’ medications by pharmacists and the failure of those nursing homes to pay a fair market rate for the pharmacists’ services. A 1982 anti-kickback law requires nursing homes to pay a fair rate for pharmacy services to discourage consulting pharmacists from endorsing or extending the prescriptions of expensive, and potentially dangerous, drugs. A majority of the nursing homes where the state found patients who were inappropriately prescribed antipsychotic medications were paying below-average fees for pharmacy services.</p>
<p>The California investigations come in the wake of a report last year by the United States Department of Health and Human Services. The report revealed that, in nursing homes nationwide, at least 40 percent of all Medicare claims for so-called atypical antipsychotics, like Risperdal, are inappropriate, given in excessive doses, given for too long, given without the need for use, without adequate monitoring or “in the presence of adverse consequences” and should be reduced or discontinued.</p>
<p>By California state law, consulting pharmacists who work for nursing homes are required to review residents’ charts monthly, and recommend to prescribing doctors that medications be stopped, reduced or changed if they pose potential dangers or are causing harmful side effects. The state health department found in its investigations that pharmacists failed to identify the misuse of antipsychotic medications in 90 percent of cases. In 59 percent of those cases, violations occurred in nursing facilities that were cited for accepting pharmacy services below cost.</p>
<p>The average pay rate for California pharmacists is $56.29 an hour, according to the Bureau of Labor Statistics. But a review of nursing home records indicated that some were billed much less, in some cases as low as $11 an hour. The state anti-kickback law bans nursing homes from accepting below-market rates “from any pharmacist or pharmacy as compensation or inducement for referral of business to any pharmacy.”</p>
<p>“When pharmacy services are provided below cost, the pharmacist may be recouping the losses by making drug recommendations according to financial incentives instead of the best interests of the residents,” said Anthony Chicotel, a lawyer with the California Advocates for Nursing Home Reform, which plans to release a report on the state investigations. “When their independence is compromised, the integrity of their protective function is eviscerated.”</p>
<p>The state investigations yielded a number of examples where the pharmacists’ protective function appeared to be compromised.</p>
<p>At Hillside Senior Care nursing home in Fremont, for example, a consulting pharmacist was billed at a rate as low as $16.24 an hour, and no more than $19.16 an hour, between January and May 2011. In the same period, according to state investigators, a pharmacist at Hillside contradicted a doctor’s request to cut back antipsychotic medication.</p>
<p>“We have corrected this already with the department,” said Vilmar Agustin, Hillside’s director of nursing.</p>
<p>At the Herman Health Care Center in San Jose, investigators found that between August 2010 and January 2011, pharmacist services were billed for as little as $23.75 an hour and not more than $29.75. The state also found prescription irregularities.</p>
<p>Mandy Sollis, Herman Health’s business office director, wrote in an e-mail: “We did increase our rate of pay to the pharmacy per regulations.” She would not specify the amount, saying it was private.</p>
<p>In the case of the elderly woman in Campbell who was prescribed drugs that the state investigators said were potentially life-threatening, “With regard to the investigation, I know there was a deficiency and a plan of correction,” said Ed Basa, who had been the administrator at Greenhills Manor at the time of the investigation last June.</p>
<p>At the Empress Care Center in San Jose, investigators found that a resident was kept on Risperdal and that the dosage was increased “without evidence of effectiveness over an eight-month period.” Another patient was on the antipsychotics Seroquel and Haldol, despite side effects that included “continuous lip smacking and shaking of the arms and legs.”</p>
<p>The resident told investigators “he had been like that for a very long time.” But the state found nothing in the resident’s chart to indicate that he suffered from side effects.</p>
<p>In another case at Empress, the state found that a resident with dementia who “refused to shower, dress and be groomed” was prescribed Zyprexa, one of a group of medications called “atypical” antipsychotics, which the Food and Drug Administration warned in 2005 were not approved for use in elderly people with dementia because they increase their risk of dying. That warning was extended in 2008 to include older antipsychotic drugs like Haldol.</p>
<p>Administrators at the Empress Care Center did not return calls asking for comment.</p>
<p>Anita Gore, a spokeswoman for the California Department of Public Health, said the recent investigations prompted her agency to pass a regulation limiting the prescription of antipsychotics for Medi-Cal recipients in nursing homes to uses approved by the federal Food and Drug Administration.</p>
<p>As a matter of routine, Ms. Gore said, nursing homes found by the state to be deficient have 10 days to submit plans of correction, but they can request an extension. “There is no set deadline for submitting a plan of correction,” she said.</p>
<p>Mr. Chicotel of California Advocates for Nursing Home Reform said he was disappointed with the state’s response to its own findings. Mr. Chicotel said he was concerned that “not a single facility was issued a citation or fined.”</a></p>
<p>laurieudesky@hotmail.com</p>
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		<title>U.S. launches national war on Alzheimer&#8217;s</title>
		<link>http://momanddadcare.wordpress.com/2012/01/27/u-s-launches-national-war-on-alzheimers/</link>
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		<pubDate>Fri, 27 Jan 2012 19:24:42 +0000</pubDate>
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				<category><![CDATA[In The News]]></category>
		<category><![CDATA[Alzheimer's]]></category>
		<category><![CDATA[Alzheimer's Disease]]></category>
		<category><![CDATA[elder care]]></category>
		<category><![CDATA[Parental Care]]></category>

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		<description><![CDATA[By Janice Lloyd, USA TODAY Updated 1/17/2012 11:48 AM GREAT FALLS, Va. — When doctors told Carol Blackwell that her husband — her best friend and the love of her life — had Alzheimer&#8217;s disease, they assured her &#8220;a cure was just around the corner.&#8221; Bob Blackwell was 64, recently retired from the CIA as [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1346&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><a href="http://yourlife.usatoday.com/health/medical/alzheimers/story/2012-01-16/US-launches-national-war-on-Alzheimers/52603476/1"><strong>By Janice Lloyd, USA TODAY Updated 1/17/2012 11:48 AM</strong><em></p>
<p>GREAT FALLS, Va. — When doctors told Carol Blackwell that her husband — her best friend and the love of her life — had Alzheimer&#8217;s disease, they assured her &#8220;a cure was just around the corner.&#8221;<br />
Bob Blackwell was 64, recently retired from the CIA as an analyst on the former Soviet Union and Europe and still functioning normally. &#8220;He was brilliant then.&#8221;</p>
<p>That was five years ago.</p>
<p>&#8220;Here we are, and there&#8217;s no cure and no promise of a cure,&#8221; Carol says, sitting in her family room, eyes wet with tears.<br />
She is Bob&#8217;s primary caregiver, and the last couple of months have been &#8220;tough,&#8221; she says. There are days when Bob doesn&#8217;t know she&#8217;s his wife. </p>
<p>&#8220;I&#8217;ve been through a lot of grieving,&#8221; she says. &#8220;I know it&#8217;s too late for a cure for Bob, the disease has moved into too many parts of his brain, but I&#8217;m praying for my children and grandchildren. We have to find a cure.&#8221;</p>
<p>Carol will be paying close attention to government meetings Tuesday and Wednesday in Washington where Health and Human Services officials are gathering with other medical experts to discuss the framework for the first national plan to fight the disease. The No. 1 goal stated in the early draft of the National Alzheimer&#8217;s Project Act is to prevent and effectively treat Alzheimer&#8217;s by 2025. Although the funding levels have not been determined, disease experts compare the multi-agency federal approach of NAPA to the wars on heart disease and cancer.</p>
<p>Alzheimer&#8217;s, which is a form of dementia that causes progressive loss of intellectual and social skills, is the only disease among the top killers for which there is no prevention, cure or treatment that will slow its progression.</p>
<p>&#8220;I think the potential impact of this plan is huge,&#8221; says Ron Petersen, chairman of the NAPA non-federal advisory council and director of the Mayo Clinic&#8217;s Alzheimer&#8217;s Disease Research Center. &#8220;Given the economic problems, it&#8217;s a bit of a challenge, but this is our chance to make a bold statement.&#8221;</p>
<p>President Obama signed NAPA into law last January. Experts have spent a year formulating the framework for the plan, and the final draft is due on the desk of HHS Secretary Kathleen Sebelius this month or early February. George Vradenburg, a member of the research committee with Petersen, says the early plan is good overall but needs to move faster: </p>
<p>&#8220;It&#8217;s the first time the government has talked about a time-based goal to stop Alzheimer&#8217;s. I&#8217;m going to urge we accelerate the time. I&#8217;m committed to 2020.&#8221;</p>
<p>The task before them is an urgent one. The disease runs in families — Bob Blackwell&#8217;s grandmother died from it, and his mother has it — and affects more than 5 million people in the USA. About half the people 85 and older have the disease. The number of cases, including early-onset Alzheimer&#8217;s like Bob Blackwell&#8217;s, is likely to triple by 2050 as the Baby Boomers grow old, at which point annual costs are likely to soar to $1 trillion. The illness costs the Medicare and Medicaid programs $130 billion a year.</p>
<p>&#8220;My mother-in-law has been in a facility for 15 years,&#8221; Carol Blackwell says. &#8220;In 2005, after her husband died … she&#8217;d used up all her money (for care), and Bob had to file for Medicaid for her. She&#8217;s been living at the government&#8217;s expense since then. We have to prevent those costs down the road.&#8221;</p>
<p>Carol and Bob Blackwell have marched on Capitol Hill with members of the Alzheimer&#8217;s Association to push for more research dollars, funding that falls behind many other diseases. In a survey last year by the Harvard School of Public Health, nearly 70% of respondents said the government should increase spending for Alzheimer&#8217;s research.</p>
<p><strong>Changing perceptions<br />
</strong><em><br />
Harry Johns, president of the Alzheimer&#8217;s Association, says the research amount needs to grow to at least $2 billion. He was in charge of strategic initiatives for the American Cancer Society before taking this post.</p>
<p>&#8220;People have different opinions about the success of the war on cancer,&#8221; Johns says, &#8220;but people are living longer (with cancer) and have hope. There is better diagnosis and drugs for some cancers. NAPA has the potential to also change the course of a disease.&#8221;<br />
He aims to eliminate the stigma. &#8220;Back in the 1960s, people didn&#8217;t talk about it,&#8221; he says. &#8220;They were ashamed of it and wanted to hide it. We need to change that public discussion.&#8221;</p>
<p>He is hopeful that new, high-profile faces of Alzheimer&#8217;s will help bring that about and put the national spotlight on the disease as Betty Ford did for breast cancer. Both Tennessee women&#8217;s basketball coach Pat Summitt and singer Glen Campbell announced last year they have Alzheimer&#8217;s and are continuing to work for as long as possible.</p>
<p>&#8220;No (celebrity) has gone public with Alzheimer&#8217;s since Ronald Reagan, and when he announced it, we didn&#8217;t see much of him anymore,&#8221; Johns says. &#8220;Pat and Glen going public have been watershed moments for the cause.&#8221;</p>
<p>Finding a drug that would slow the progress of Alzheimer&#8217;s for just five years would greatly reduce government costs and the toll on families, Johns says: &#8220;There really isn&#8217;t another disease that has this kind of impact. It is disproportionately under-invested.&#8221;<br />
Where the money will come from is the key question. The National Institutes of Health oversees the bulk of the groundbreaking research against diseases. Francis Collins, director of the NIH, told USA TODAY in July that the agency&#8217;s budget was cut $321 million in the fiscal year, the second time in 40 years the NIH has had a budget that was less than the preceding year.</p>
<p>The government spent about $500 million in 2011 on research for Alzheimer&#8217;s and related dementias. By comparison, approximately $521 million was spent on complementary and alternative medicine and $823 million on obesity. Cancer drew a $6 billion check in 2011 for starters, with additional funding allocated for breast, brain and lung cancers.<br />
&#8220;We&#8217;re still in the process of getting feedback and making recommendations about funding levels,&#8221; Petersen says. &#8220;But the plan will have to be in tune with the fiscal realities everyone is facing right now.&#8221;</p>
<p>Petersen expects HHS to finalize the plan for NAPA by late April in time for a research summit in May at the National Institute on Aging.<br />
Encouraging progress<br />
Petersen is encouraged by progress in the past five years. Researchers identified genes associated with the disease and have a clearer idea of when the disease begins — often as early as 10 or 15 years before symptoms appear — and what causes it. They have discovered some of the disease&#8217;s biomarkers in a variety of tests, potentially making diagnosis possible years before the disease causes damage. Before, the only way to identify Alzheimer&#8217;s was through an autopsy of the brain.</p>
<p>Researchers suspect that plaques and tangles growing in the brain are destroying nerve cells and pathways in some forms of the disease. Researchers hope ultimately to treat the disease by targeting risk factors, such as the plaques, with drugs. Petersen compares the process to preventing or slowing heart disease.</p>
<p>&#8220;By knowing the risk factors for heart disease, doctors can treat those risk factors and prevent the heart attack,&#8221; he says. The aim is to identify drugs to treat the risk factors for Alzheimer&#8217;s in the same way statins lower bad cholesterol levels, one of the primary risk factors for heart disease.</p>
<p>The drugs for Alzheimer&#8217;s only treat the symptoms. Once symptoms appear, it is too late to stop the disease from progressing and killing more brain cells.</p>
<p>Bob Blackwell takes Aricept and Namenda, drugs approved by the Food and Drug Administration to treat two different brain-messaging symptoms at different stages of the disease. Their effect is usually modest.<br />
&#8220;They helped enormously, especially in the beginning,&#8221; Carol says. &#8220;It was like getting Bob back for a year.&#8221;</p>
<p>She hoped the fact that Bob was in good physical health would help. Both she and Bob are slim and fit. &#8220;We&#8217;ve done everything right,&#8221; she says. &#8220;We&#8217;ve eaten right, exercised, done all the things they recommend to ward off disease. But it doesn&#8217;t work (against Alzheimer&#8217;s). I&#8217;ve seen this disease take down the best and brightest.&#8221;</p>
<p><strong>A growing list of &#8216;lasts&#8217;</strong></em><br />
She takes Bob to adult day care two days a week, where he does activities with other Alzheimer&#8217;s patients.<br />
&#8220;He didn&#8217;t like it at first,&#8221; she says, but she had no other option. She works part-time and could not leave him alone at home. &#8220;I tried that once, and he called my daughter and daughter-in-law, and he said he&#8217;d been abandoned.&#8221;</p>
<p>Bob has always been a photography buff, but his illness makes it difficult for him to remember the settings on the camera. He has boxes full of images from trips to St. Petersburg, Russia, and to a family cottage in Michigan.</p>
<p>&#8220;The neurologist told me we couldn&#8217;t travel anymore because of how his disease has progressed,&#8221; Carol says. &#8220;It&#8217;s too confusing for him.&#8221;<br />
In a blog she keeps for USA TODAY, she has been writing about &#8220;the season of lasts&#8221; — listing things Bob has done for the last time. He has been a lifelong fan of University of Georgia football, for instance, but following the games last fall was too challenging. Exhibiting his photos in shows also is too taxing.</p>
<p>The past couple of weeks, Bob has been getting up around 5:30 a.m. and wandering around the house.</p>
<p>&#8220;He was fully dressed the first time, and I&#8217;m surprised I didn&#8217;t hear him,&#8221; Carol says. &#8220;He doesn&#8217;t try to go outside because he likes to be in the house and hates the cold, but I&#8217;m going to have to take precautions and turn on the house alarm.&#8221;</p>
<p>She says Bob is frustrated, sometimes asking her why he can&#8217;t get a job.<br />
She shows a visitor photos on the family room wall of a trip Bob took on Air Force II with then-Vice President George H.W. Bush to the former Soviet Union. Bob smiles, raises a finger and points at himself in the photo sitting across from Bush.</p>
<p>He does not remember the vice president&#8217;s name.</a></p>
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		<title>Hiring a Caregiver Requires Research</title>
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		<pubDate>Fri, 27 Jan 2012 19:16:24 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
		
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		<description><![CDATA[By PAMELA YIP Personal Finance Writer Michael Hogue/Staff Artist Dallas Morning News Published: 06 January 2012 07:42 PM When my father was diagnosed with lung cancer 12 years ago, I was faced with the prospect of hiring a caregiver for him. The task was made even more daunting because he lived in California. He was [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1326&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><strong>By PAMELA YIP<br />
Personal Finance Writer<br />
Michael Hogue/Staff Artist<br />
Dallas Morning News<br />
Published: 06 January 2012 07:42 PM</strong></p>
<p><a href="http://momanddadcare.wordpress.com/2012/01/27/hiring-a-caregiver-requires-research/caregiver1-300x300/" rel="attachment wp-att-1327"><img src="http://momanddadcare.files.wordpress.com/2012/01/caregiver1-300x300.jpg?w=497" alt="" title="caregiver1-300x300"   class="alignleft size-full wp-image-1327" /></a> </p>
<p>When my father was diagnosed with lung cancer 12 years ago, I was faced with the prospect of hiring a caregiver for him.</p>
<p>The task was made even more daunting because he lived in California.</p>
<p>He was placed in hospice care, which Medicare covered, and I went back home to care for him. I never reached the point where I had to hire a caregiver, but that’s not the case for many families.</p>
<p>Twenty-nine percent of the U.S. adult population, or 65.7 million people, are caregivers of adults, the elderly or children with special needs, according to a 2009 report by the National Alliance for Caregiving and the AARP.</p>
<p>Many try to go it alone at first, then discover that they need help.</p>
<p>“There are so many cases where families just can’t do all of it,” said Lue Taff, geriatric care manager at the Senior Source in Dallas, which serves the senior community. “We see many instances where they need to hire an outside caregiver. There are a lot of people who have dementia who really need somebody to be with them all the time.”</p>
<p>Christy Bednar hired a caregiver for her 87-year-old husband, who has Alzheimer’s disease.</p>
<p>“I wanted him to be safe and comfortable and feel safe and comfortable,” she said.</p>
<p>She finds that having a caregiver helps reduce the stress on her and gives her time to be a competitive master swimmer.</p>
<p>“I said to myself right off the bat, if I’m going to be able to do what I need to do to take care of my husband as a wife, if I’m going to be able to treasure my relationship with him and be happy with him, then I needed to maintain my schedule,” said Bednar, 67. “I need that time in the water to be me.”</p>
<p>Here are things to consider when hiring a caregiver:</p>
<p><em><strong>Using an agency<br />
</strong></em><br />
A critical decision you’ll face is whether to hire a caregiver yourself or go through a home care agency.</p>
<p>There are two kinds of home care agencies: one that provides medical services and therapy, and one that provides companionship, light housekeeping, transportation and meal preparation.</p>
<p>“The medical agency takes care of anything that requires a nurse, but they [your loved one] have to have a skilled nursing need in order to qualify for that,” said Kay Paggi, a geriatric care manager. “If you just need an insulin shot, you’re not going to get that covered. Medicare pays for a skilled nursing need.”</p>
<p>Medicare does cover some home health care, but those services are intended mainly for patients recovering from illnesses or injuries. The federal health care program just isn’t set up to meet the long-term day-to-day needs of the chronically ill.</p>
<p>The non-medical type of agency is not covered by Medicare. You pay for that out of your own pocket.</p>
<p>There are advantages and disadvantages to both hiring a caregiver on your own and using an agency, according to the Family Caregiver Alliance.</p>
<p>With a privately hired home care worker, the continuity of care by one person can allow a strong one-on-one relationship to develop between the worker and the person receiving care.</p>
<p>Of course, this can also happen through an agency when there is a commitment to using the same caregiver.</p>
<p>Your chances of keeping the same worker are enhanced if you can provide a routine schedule for caregiving, said Lori Nesler, owner of Comfort Keepers in Dallas, which provides in-home companionship and care services.</p>
<p>“I tell my clients, ‘If you can establish a routine, that allows the agency to better staff vs. saying, ‘Let me call you tomorrow and tell you what I want next week,’” she said. “Tell us the days and hours that someone would need us for.”</p>
<p>A privately hired caregiver is usually less expensive than one hired by an agency.</p>
<p>“The one big major disadvantage is they do typically cost more than a private provider because you’re paying for the agency supervision and agency overhead,” said Kathy O’Brien, senior gerontologist at the MetLife Mature Market Institute, which studies aging issues.</p>
<p>On the other hand, if a privately hired worker is sick, no substitute is readily available as there is with an agency. However, before signing up, you should ask how quickly the agency will send a substitute if your regular caregiver can’t come one day.</p>
<p>Also ask how a home care agency would try to match a caregiver with your loved one, Paggi said.</p>
<p>“How do they handle caregivers who don’t match with the client?” she said. “Will they send someone else?”</p>
<p>A home care agency also will handle the background check of caregivers, as well as payroll and tax duties. Those tasks would fall to you if you hired a caregiver yourself.</p>
<p><strong>Get recommendations<br />
</strong><em><br />
Ask friends or colleagues for recommendations or consider hiring a geriatric care manager to help.</p>
<p>“Otherwise, it’s always a pig in a poke,” said Bob Hogue, 75, whose last caregiver came via referral from the Senior Source’s Geriatric Care Management program.</p>
<p>“It worked like a charm,” he said. “I was spoiled rotten, and I can take a lot of that.”</p>
<p>If your loved one is being discharged from a hospital, ask your doctor or the staffers handling the discharge for agency referrals.</p>
<p>Another source is organizations that specialize in a specific disease, such as the Alzheimer’s Association.</p>
<p><em><strong>Interview candidates</strong><br />
</em><br />
Here are critical questions to ask potential caregivers:</p>
<p>How much experience do they have in caregiving?</p>
<p>If your loved one has a specific health problem, such as Alzheimer’s, ask if the caregiver has experience in caring for patients with that disease.</p>
<p>How compatible is the caregiver’s personality with your loved one’s?</p>
<p>“Trust is key,” said Bednar, who said her husband is a “very sociable person.”</p>
<p>“He likes to talk about himself, and it’s important that his caregiver be interested in him, be ready to listen to stories about his life,” Bednar said.</p>
<p>How would the caregiver handle a challenging situation with your loved one?</p>
<p>“You want to know how creative this person is,” Taff said. “A question I always ask people is, ‘If you’re dealing with someone with Alzheimer’s, if they don’t want to eat or take a bath, how would you handle that situation?’”</p>
<p>Is the caregiver an employee of the agency or an independent contractor?</p>
<p>“I wanted an agency that had employees because I thought that would mean better control over the whole situation,” Bednar said.</p>
<p>Caregiving is demanding. If circumstances require you to hire a caregiver to assist with someone you love, your priority should be the security, happiness and safety of that individual.</p>
<p>But don’t try to be a hero and go it alone.</p>
<p>“It’s important for you to be involved,” O’Brien said. “But it’s also important for you to take care of yourself and your health because if you get sick and something happens to you and you’re taking on more than you’re able to handle, it’s not going to be good for your mother, either.”</p>
<p><em><strong>Resources for advice</strong></em></p>
<p>Here are some sources of information and help with hiring a caregiver:</p>
<p>The Senior Source: Has many programs that help caregivers and older adults. Those include geriatric care management, elder support, the Nursing Home Ombudsman Program and the Money Management Program. <a href="http://www.theseniorsource.org">www.theseniorsource.org</a> or 214-823-5700</p>
<p>The Family Caregiver Alliance: Has good fact sheets and information that focuses on specific problems. <a href="http://www.caregiver.org">www.caregiver.org<br />
</a><br />
National Association of Professional Geriatric Care Managers: Has tips on how to select a geriatric care manager. <a href="http://www.caremanager.org">www.caremanager.org<br />
</a><br />
The National Alliance for Caregiving: A nonprofit coalition of national organizations focusing on issues of family caregiving. <a href="http://www.caregiving.org">www.caregiving.org</a></p>
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		<title>Mom and Dad&#8217;s money: 5 tips on talking to parents about their finances</title>
		<link>http://momanddadcare.wordpress.com/2012/01/27/mom-and-dads-money-5-tips-on-talking-to-parents-about-their-finances/</link>
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		<pubDate>Fri, 27 Jan 2012 18:44:59 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
		
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		<description><![CDATA[By: Scott J. Wilson, McClatchy Newspapers, INFORUM As your parents grow older, you may start wondering if they have enough money to sustain their lifestyle and protect them in case of problems. But many people find it difficult and awkward to ask Mom and Dad about their finances. Here are some tips to make that [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1323&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.inforum.com/event/article/id/347138/">By: Scott J. Wilson, McClatchy Newspapers, INFORUM</p>
<p>As your parents grow older, you may start wondering if they have enough money to sustain their lifestyle and protect them in case of problems. But many people find it difficult and awkward to ask Mom and Dad about their finances. Here are some tips to make that discussion easier:</p>
<p>Look for a subtle invitation. “Sometimes parents will signal when they want to have ‘The Talk,’ “ wrote Jeff D. Opdyke in his book, “Protecting Your Parents’ Money.” The parent may, for example, start complaining about stock market losses, a large medical bill or the cost of replacing a car. “Such comments might well be a parent’s way of trying to draw you into a conversation they’ve wanted to have with you for a while.”<br />
Don’t wait too long. If your parents don’t give you a signal, you’ll have to initiate the conversation, and the sooner the better. “If you wait until one of your parents develops a serious illness, it will be much more difficult to have this kind of conversation,” noted “Communication with Your Parents about Finances,” a 2009 University of California publication.<br />
Consider what you want to discuss first. Key questions include: Are your parents scraping by, or do they have adequate savings? Do each of your parents have a will, and do you know where it is? How adequate is their health insurance? “Don’t expect to cover all the issues in one conversation,” warned the UC publication.<br />
Don’t blame, criticize or condescend. If you come on too forcefully, your parents may think you’re just after their money, and will tune you out. “The worst action you can take is to get mad, raise your voice, yell or threaten to take control of your parent’s finances anyway or to seek legal advice in helping you take control,” Opdyke said.<br />
Be direct. Tell your parents that while you don’t need to know every detail, you do need to understand their finances well enough to be able to help them in case their health fails, or another emergency occurs. “They’re much more likely to respect your approach because it clearly leaves them in control of the process and tells them you’re not out for selfish gains,” noted Opdyke.<br />
</a></p>
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		<title>Resource for Caregivers Marks One-Year Anniversary</title>
		<link>http://momanddadcare.wordpress.com/2012/01/27/resource-for-caregivers-marks-one-year-anniversary/</link>
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		<pubDate>Fri, 27 Jan 2012 18:40:16 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
				<category><![CDATA[In The News]]></category>
		<category><![CDATA[Caregivers Resource]]></category>

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		<description><![CDATA[Vol. 57, No. 1, January 2012 Consumers have learned about the standards through publications such as the AARP 2011 annual report on the economic value of caregiving. By Paul R. Pace, NEWS Staff “Attention to the contributions, strengths, needs and goals of family caregivers of older adults are integral to social work practice.” This statement [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1315&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
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Vol. 57, No. 1, January 2012</p>
<p>Consumers have learned about the standards through publications such as the AARP 2011 annual report on the economic value of caregiving.</p>
<p>By Paul R. Pace, NEWS Staff</p>
<p>“Attention to the contributions, strengths, needs and goals of family caregivers of older adults are integral to social work practice.”</p>
<p>This statement summarizes the intent of the NASW Standards for Social Work Practice with Family Caregivers of Older Adults. The document, available for a free download at www.socialworkers.org/practice, celebrated its one-year publication anniversary in November. The resource continues to be used not only by students, faculty, practitioners and aging-services organizations, but also by consumers.</p>
<p>Sandra Edmonds Crewe, associate dean for Academic and Student Advancement and director of the Multidisciplinary Center for Gerontology at Howard University in Washington, D.C., served on the expert panel that developed the 12 standards.</p>
<p>She said it was essential for her to participate on the panel to further the knowledge that families play a vital role in helping clients as they age.</p>
<p>“I also see how important it is to have social workers work with family care systems,” she said.</p>
<p>In the past year, Crewe said she has presented the standards to a variety of groups, including as host of a webinar on the standards for the Family Caregivers Alliance. An archived version of the webinar can be found at www.caregiver.org.</p>
<p>Crewe joined other members of the expert panel in disseminating the document in the past year. Spreading the word about the standards is vital, as caregiving for older adults is a topic that is seldom planned in advance. Social workers and other caregivers can benefit from reviewing the publication. “These standards help you help (clients),” Crewe said. “We must assume everyone (in social work) will be involved in caregiving in some way. We must prepare the professionals to maximize service and to empower family members and help the systems that serve families.”</p>
<p>Development of the standards was part of Professional Partners Supporting Family Caregivers, an initiative created in partnership with the AARP Foundation, the U.S. Administration on Aging, the Family Caregiver Alliance, and NASW, and made possible by funding from the John A. Hartford Foundation.</p>
<p>NASW Senior Practice Associate Chris Herman spoke about the standards as part of a panel on the Professional Partners initiative at the National Home and Community-Based Services Conference in September. Herman also will present on the standards with Jamie Huysman and John A. Hartford Foundation staff Amy Berman and Nora O’ Brien-Suric — all of whom helped develop the standards — at the American Society on Aging conference in March.</p>
<p>The standards have been disseminated to scores of organizations, including the Hartford Partnership Program for Aging Education, the Council on Social Work Education, the Institute for Geriatric Social Work, the Administration on Aging, the Department of Veterans Affairs, and geriatric education centers throughout the country.</p>
<p>Consumers have learned about the standards through publications such as the AARP 2011 annual report on the economic value of caregiving, which describes the steps health care professionals are taking to support family caregivers. It lists the standards as an example.</p>
<p> In other gerontological social work news, social worker Erica Solway, program director of Older Adult Day Support/Community Integration Services at the Family Service Agency of San Francisco, was recently chosen to participate in the Health and Aging Policy Fellows Program. Past social work Health and Aging Policy Fellows include Gretchen Alkema, vice president of Policy and Communications for the Scan Foundation, and Kathryn Kietzman, research scientist at the University of California-Los Angeles Center for Health Policy Research.</p>
<p>In addition, Joan Levy Zlotnik, director of the NASW Foundation’s Social Work Policy Institute, and staff of the NASW Center for Workforce Studies and Social Work Practice met recently with social worker Abigail</p>
<p>Morgan, social science analyst for the Administration on Aging Office of Policy Analysis and Development. Morgan is working on Partnership for Patients — an effort of the Department of Health and Human Services to develop public/private partnerships to help meet some of the goals of the Affordable Care Act. The initiative leverages existing and new programs to meet two core goals: reducing health care-associated injuries and complications and improving transitions from acute care hospitals to other care settings, such as the home or a skilled nursing facility.</p>
<p>Zlotnik said Morgan invited NASW to discuss the association’s efforts that relate to implementation of the ACA, transitions of care, caregiving and issues related to aging, health and social work.</p>
<p>“We also suggested that we would be pleased to find social work experts for various workgroups and committees that are being convened in implementing the ACA,” Zlotnik said.</p>
<p>NASW will continue to promote social work efforts with AoA staff, she added.</p>
<p><em>From January 2012 NASW News. © 2012 National Association of Social Workers. All Rights Reserved. NASW News articles may be copied for personal use, but proper notice of copyright and credit to the NASW News must appear on all copies made. This permission does not apply to reproduction for advertising, promotion, resale, or other commercial purposes.</em></p>
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		<title>Millions now manage aging parents&#8217; care from afar</title>
		<link>http://momanddadcare.wordpress.com/2012/01/27/millions-now-manage-aging-parents-care-from-afar/</link>
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		<pubDate>Fri, 27 Jan 2012 18:27:58 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
				<category><![CDATA[In The News]]></category>
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		<category><![CDATA[elder care]]></category>
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		<description><![CDATA[Logistics, communication difficult for 7 million Americans who are long-distance caregivers By MATT SEDENSKY updated 1/26/2012 1:40:14 PM ET WEST PALM BEACH, Fla. — Kristy Bryner worries her 80-year-old mom might slip and fall when she picks up the newspaper, or that she&#8217;ll get in an accident when she drives to the grocery store. What if she has [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1294&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.msnbc.msn.com/id/46150872/ns/health-aging/#">Logistics, communication difficult for 7 million Americans who are long-distance caregivers</p>
<p>By MATT SEDENSKY<br />
updated 1/26/2012 1:40:14 PM ET<br />
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WEST PALM BEACH, Fla. — Kristy Bryner worries her 80-year-old mom might slip and fall when she picks up the newspaper, or that she&#8217;ll get in an accident when she drives to the grocery store. What if she has a medical emergency and no one&#8217;s there to help? What if, like her father, her mother slips into a fog of dementia?</p>
<p>Those questions would be hard enough if Bryner&#8217;s aging parent lived across town in Portland, Ore., but she is in Kent, Ohio. The stress of caregiving seems magnified by each of the more than 2,000 miles that separate them.</p>
<p>&#8220;I feel like I&#8217;m being split in half between coasts,&#8221; said Bryner, 54. &#8220;I wish I knew what to do, but I don&#8217;t.&#8221;</p>
<p>As lifespans lengthen and the number of seniors rapidly grows, more Americans find themselves in Bryner&#8217;s perilous position, struggling to care for an ailing loved one from hundreds or thousands of miles away.</p>
<p>The National Institute on Aging estimates around 7 million Americans are long-distance caregivers. Aside from economic factors that often drive people far from their hometowns, shifting demographics in the country could exacerbate the issue: Over the next four decades, the share of people 65 and older is expected to rapidly expand while the number of people under 20 will roughly hold steady. That means there will be a far smaller share of people between 20 and 64, the age group that most often is faced with caregiving.</p>
<p>&#8220;You just want to be in two places at once,&#8221; said Kay Branch, who lives in Anchorage, Alaska, but helps coordinate care for her parents in Lakeland, Fla., about 3,800 miles away.</p>
<p>There are no easy answers.</p>
<div>
<div>Bryner first became a long-distance caregiver when, more than a decade ago, her father began suffering from dementia, which consumed him until he died in 2010. She used to be able to count on help from her brother, who lived close to their parents, but he died of cancer a few years back. Her mother doesn&#8217;t want to leave the house she&#8217;s lived in for so long.</div>
</div>
<p>So Bryner talks daily with her mother via Skype, a video telephone service. She&#8217;s lucky to have a job that&#8217;s flexible enough that she&#8217;s able to visit for a couple of weeks every few months. But she fears what may happen when her mother is not as healthy as she is now.</p>
<p>&#8220;Someone needs to check on her, someone needs to look out for her,&#8221; she said. &#8220;And the only someone is me, and I don&#8217;t live there.&#8221;</p>
<p>Many long-distance caregivers say they insist on daily phone calls or video chats to hear or see how their loved one is doing. Oftentimes, they find another relative or a paid caregiver they can trust who is closer and able to help with some tasks.</p>
<p>Yet there always is the unexpected: Medical emergencies, problems with insurance coverage, urgent financial issues. Problems become far tougher to resolve when you need to hop on a plane or make a daylong drive.</p>
<p>&#8220;There are lots of things that you have to do that become these real exercises in futility,&#8221; said Ed Rose, 49, who lives in Boston but, like his sister, travels frequently to Chicago to help care for his 106-year-old grandmother, Blanche Seelmann.</p>
<p>Rose has rushed to his grandmother&#8217;s side for hospitalizations, and made unexpected trips to solve bureaucratic issues like retrieving a document from a safe-deposit box in order to open a bank account.</p>
<p>But he said he has also managed to get most of the logistics down to a routine.</p>
<p>He uses Skype to speak with his grandmother every day and tries to be there whenever she has a doctor&#8217;s appointment. Aides handle many daily tasks and have access to a credit card for household expenses. They send him receipts so he can monitor spending. He has an apartment near his grandmother to make sure he&#8217;s comfortable on his frequent visits.</p>
<p>Even for those who live near those they care for, travel for work can frequently make it a long-distance affair. Evelyn Castillo-Bach lives in Pembroke Pines, Fla., the same town as her 84-year-old mother, who has Alzheimer&#8217;s disease. But she is on the road roughly half the year, sometimes for months at a time, both for work with her own Web company and accompanying her husband, a consultant for the United Nations.</p>
<p>Once, she was en route from Kosovo to Denmark when she received a call alerting her that her mother was having kidney failure and appeared as if she would die. She needed to communicate her mother&#8217;s wishes from afar as her panicked sister tried to search their mother&#8217;s home for her living will. Castillo-Bach didn&#8217;t think she could make it in time to see her mother alive once more.</p>
<p>&#8220;I won&#8217;t get to touch my mother again,&#8221; she thought.</p>
<div>
<div>She was wrong. Her mother pulled through. But she says it illustrates what long-distance caregivers so frequently go through.</div>
</div>
<p>&#8220;This is one of the things that happens when you&#8217;re thousands of miles away,&#8221; Castillo-Bach said.</p>
<p>Lynn Feinberg, a caregiving expert at AARP, said the number of long-distance caregivers is likely to grow, particularly as a sagging economy has people taking whatever job they can get, wherever it is. Though caregiving is a major stress on anyone, distance can often magnify it, Feinberg said, and presents particular difficulty when it must be balanced with an inflexible job.</p>
<p>&#8220;It&#8217;s a huge stress,&#8221; she said. &#8220;It can have enormous implications not only for someone&#8217;s quality of life, but also for someone&#8217;s job.&#8221;</p>
<p>It can also carry a huge financial burden. A November 2007 report by the National Alliance for Caregiving and Evercare, a division of United Health Group, found annual expenses incurred by long-distance caregivers averaged about $8,728, far more than caregivers who lived close to their loved one. Some also had to cut back on work hours, take on debt of their own and slash their personal spending.</p>
<p>Even with that in mind, though, many long-distance caregivers say they don&#8217;t regret their decision. Rita Morrow, who works in accounting and lives in Louisville, Ky., about a six-hour drive from her 90-year-old mother in Memphis, Tenn., does all the juggling too.</p>
<p>She has to remind her mother to take her medicine, make sure rides are lined up for doctor&#8217;s appointments, rush to her aid if there&#8217;s a problem. She knows her mom wants to stay in her home, to keep going to the church she&#8217;s gone to the past 60 years, to be near her friends.</p>
<p>&#8220;We do what we have to do for our parents,&#8221; she said. &#8220;My mother did all kinds of things for me.&#8221;</a></p>
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		<title>Bargaining for a Child’s Love</title>
		<link>http://momanddadcare.wordpress.com/2012/01/15/bargaining-for-a-childs-love/</link>
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		<pubDate>Sun, 15 Jan 2012 14:27:01 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
				<category><![CDATA[In The News]]></category>
		<category><![CDATA[Alzheimer's Disease]]></category>
		<category><![CDATA[dementia]]></category>
		<category><![CDATA[elder care]]></category>
		<category><![CDATA[Parental Care]]></category>
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		<description><![CDATA[January 14, 2012 The New York Times By HENDRIK HARTOG Princeton, N.J. ECONOMIC malaise and political sloganeering have contributed to the increasingly loud conversation about the coming crisis of old-age care: the depletion of the Social Security trust fund, the ever rising cost of Medicare, the end of defined-benefit pensions, the stagnation of 401(k)’s. News [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1266&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.nytimes.com/2012/01/15/opinion/sunday/bargaining-for-a-childs-love.html?_r=1&amp;ref=opinion"><em>January 14, 2012<br />
The New York Times<br />
By HENDRIK HARTOG<br />
Princeton, N.J.</em></p>
<p><div id="attachment_1268" class="wp-caption alignleft" style="width: 200px"><img src="http://momanddadcare.files.wordpress.com/2012/01/15hartog-articleinline1.jpg?w=497" alt="" title="15HARTOG-articleInline"   class="size-full wp-image-1268" /><p class="wp-caption-text">Nicholas Nixon, courtesy Fraenkel Gallery, San Francisco and Pace MacGill Gallery, New York “C. C., Boston” (1983)</p></div>ECONOMIC malaise and political sloganeering have contributed to the increasingly loud conversation about the coming crisis of old-age care: the depletion of the Social Security trust fund, the ever rising cost of Medicare, the end of defined-benefit pensions, the stagnation of 401(k)’s. News accounts suggest that overstretched and insufficient public services are driving adult children “back” toward caring for dependent parents.</p>
<p>Such accounts often draw on a deeply sentimental view of the past. Once upon a time, the story line goes, family members cared for one another naturally within households, in an organic and unplanned process. But this portrait is too rosy. If we confront what old-age support once looked like — what actually happened when care was almost fully privatized, when the old depended on their families, without the bureaucratic structures and the (under)paid caregivers we take for granted — a different picture emerges.</p>
<p>For the past decade I have been researching cases of family conflict over old-age care in the decades before Social Security. I have found extraordinary testimony about the intimate management of family care: how the old negotiated with the young for what they called retirement, and the exertions of caregiving at a time when support by relatives was the only sustenance available for the old.</p>
<p>In that world, older people could not rely on habit or culture or nature if they wanted their children to support them when they became frail. In an America strongly identified with economic and physical mobility, parents had to offer inducements. Usually, the bait they used was the promise of an inheritance: stay and take care of me and your mother, and someday you will get the house and the farm or the store or the bank account.</p>
<p>But of course what was at stake was never just an economic bargain between rational actors. Older people negotiated with the young to receive love, to be cared for with affection, not just self-interest.</p>
<p>The bargains that were negotiated were often unstable and easily undone. Life expectancies were considerably lower than they are now, but even so, old age could easily stretch for decades. Of course, disease, injury, disability, dementia, insanity, incontinence — not to mention sudden death — were commonplace, too. Wills would be left unwritten, deeds unconveyed, promises unfulfilled, because of the onset of dementia or the meddling of siblings. Or property was conveyed too early, and then the older person would be at the mercy of a child who no longer “cared” — or who could not deal with the work of care.</p>
<p>Consider one story, drawn from a court case in New Jersey that ended in 1904. George H. Slack had been a carpenter and a contractor in Trenton, living in a house with his wife, their daughter, Ella Rees, and her husband and daughter.</p>
<p>According to witnesses, the father’s syphilis had eroded his capacity to conduct business. He was not insane or incompetent, but he was increasingly deaf and uninterested in the world. According to one son, his father had become “cranky and hard to get along with, and he would go into the stable and flog the horses until the neighbors would interfere.” He was “drowsy and sleepy all the time.” He was gluttonous and depressed and didn’t clean himself, the son remembered; the family “had to force him to wash himself, he was so dirty.” The other son recalled that Ella had difficulty “getting him to change his underwear.”</p>
<p>Sometime in 1899 or 1900, Ella and her family moved to a house nearby. One brother claimed that their father had ordered her out of the home, but Ella insisted she had left because she could not take it any longer. “My mother was insane,” she later recalled, “and I could not get along with her.”</p>
<p>What “insane” meant to her is impossible to reconstruct in modern diagnostic terms. But in November 1901, Ella’s mother wandered away from the house. She began to walk north along the Delaware River. Eventually, she was found in the river’s cold water by a trapper. She was taken to a farmhouse where her clothes were dried and she was given something warm to drink. And then she was taken back to Trenton.</p>
<p>Ella returned briefly to care for her mother, but on Christmas Eve, Ella’s own daughter became ill, and, as she put it, “I was called home” — that is, to her own house. When she left, her father told her that “you will move back home with me again.” But she replied, “No, Father, the way Ma’s mind is no one can get along with her here, she knows she’s boss, and no one can get along with her, and I cannot come back here.”</p>
<p>At that point, Mr. Slack promised his daughter, “If you will come home, I will deed my property to you.” He said his Civil War pension would be enough to live on. But Ella was unswayed. “I said I wanted them to live and enjoy all they had,” she said.</p>
<p>Though she would not move back in with her parents, even with a promise of property, she did come back two or three times a week to clean house and provide care. But then, in spite of her resolve, her mother “got so bad,” Ella said later, that she had to move back. Finally, in the early summer of 1902, her mother was placed in the Trenton Asylum for the Insane, where she died on Aug. 10, 1902.</p>
<p>On the day of his wife’s death, Mr. Slack left his home and moved in with Ella. Two days later, he collapsed in her bathroom. He rallied and called for doctors and for a lawyer to draft deeds that transferred his property to Ella. That done, in two days he was dead.</p>
<p>At her father’s funeral, Ella’s brothers asked if she knew about the property their father had left. She said that Pa had told her not to say anything until after the funeral. Her brothers pressed her, and she told them that the property had been left to her. One brother asked her if she “thought that was right.” She replied that it was — because, as she later recounted, “I had stayed home and sacrificed all my life for them.” The brother told her “then and there” that he would fight her in court, she later testified.</p>
<p>SO much has changed since the early 20th century in the physical, economic and familial lives of older people, as well as in the work lives of their adult children, particularly women. We live in vastly different ways than Mr. Slack’s family did. Our moral and relational expectations have changed as well. Everyone who studies old-age care concludes that family members still do a great deal. Yet the care they offer is typically enmeshed with and dependent on bureaucracies and on the labor of others: home health care attendants, hospital orderlies and hospice aides, many of whom are recent immigrants. To provide care as a middle- or upper-class family member is ordinarily to manage or help manage the care for a disabled or aging parent, not the work of cleaning bedsheets, helping a parent into a bathtub, changing a diaper.</p>
<p>Comparisons between the present and even the not-so-distant past are always awkward and incomplete. Still, stories like that of Ella Rees challenge an easy celebration of family care and household intimacy in an imagined past. When 19th- and early 20th-century family members negotiated with one another around needs and care, the outcomes were only occasionally happy. Their insular world was a very dark world for old-age care, because there was so little support beyond blood relations.</p>
<p>Dependency and disability still confront us as facts of life. There is little happiness in the inevitable but unpredictable decline that awaits all of us. And many younger people still experience themselves as trapped by a sense of duty to care for older relatives. Yet few of us are trapped as Ella Rees was. Our traps are different, often of our own making, and incorporate the work of others.</p>
<p>We may not love the bureaucracies and the institutions that shape our lives today. But would many of us really want to live in a world without them?</p>
<p><em>Hendrik Hartog is a professor of history at Princeton and the author of “Someday All This Will Be Yours: A History of Inheritance and Old Age.”</em></a></p>
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		<title>Stronger Together&#8211;Facing Chronic Illness As A Couple</title>
		<link>http://momanddadcare.wordpress.com/2012/01/14/stronger-together-facing-chronic-illness-as-a-couple/</link>
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		<pubDate>Sat, 14 Jan 2012 20:00:52 +0000</pubDate>
		<dc:creator>Butch</dc:creator>
				<category><![CDATA[In The News]]></category>
		<category><![CDATA[Chronic Illness]]></category>

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		<description><![CDATA[Meredith Vieira and Richard M. Cohen thrive as parents and partners while managing his chronic disease by: Margaret Guroff &#124; from: AARP The Magazine &#124; Dec. 2011/Jan. 2012 issue Meredith Vieira misses Lenny. Sitting with her husband, author Richard M. Cohen, on the deck of the couple&#8217;s airy vacation cottage on Cape Cod, she recalls [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=momanddadcare.wordpress.com&amp;blog=12608636&amp;post=1257&amp;subd=momanddadcare&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.aarp.org/relationships/friends-family/info-11-2011/vieira.html#.TxBu2vz8bws.mailto"><strong>Meredith Vieira and Richard M. Cohen thrive as parents and partners while managing his chronic disease</strong><br />
<em>by: Margaret Guroff | from: AARP The Magazine | Dec. 2011/Jan. 2012 issue</em></p>
<p>Meredith Vieira misses Lenny. Sitting with her husband, author Richard M. Cohen, on the deck of the couple&#8217;s airy vacation cottage on Cape Cod, she recalls the crowd that collected outside the plate glass windows of NBC&#8217;s Today show studio while she worked: tourists, gawkers, publicity seekers, and devoted fans such as the uni-monikered Lenny, a military retiree who stands a daily vigil in the Rockefeller Center throng.<br />
<div id="attachment_1259" class="wp-caption alignleft" style="width: 210px"><img src="http://momanddadcare.files.wordpress.com/2012/01/200-meredith-vieira-and-family-imgcache-rev13224943337881.jpg?w=497" alt="" title="200-meredith-vieira-and-family.imgcache.rev1322494333788"   class="size-full wp-image-1259" /><p class="wp-caption-text">Meredith Vieira and author Richard M. Cohen rely on acceptance, on denial...and on each other.<br />
— Photo by Jim Wright</p></div><br />
&#8220;I had a lot of respect for those people,&#8221; says Vieira, who left Today in June after nearly five years as cohost. The crowd, which begins gathering before dawn in all weather, was a humbling reminder of the 60-year-old show&#8217;s place in American life, she says. When she stayed after to shake hands with crowd members — something she did every day — &#8220;a lot of people would say, &#8216;We wake up with you every morning,&#8217; &#8221; she recalls.</p>
<p>&#8220;It is tough,&#8221; interjects Cohen with a laugh. &#8220;I mean, I have to do that!&#8221;</p>
<p>And so Vieira&#8217;s earnest reflection on her role in a TV tradition makes way for Cohen&#8217;s needling wit — the natural order with these two. Married since 1986 and the parents of three young adults, the pair approach their life together with a levity that belies the grave challenges they&#8217;ve faced and continue to face.</p>
<p>On this bright morning, the deck looks out on a placid cove scattered with reeds, but Cohen can&#8217;t see the vista. Instead, he sees only an impressionistic blur. Now 63, Cohen was diagnosed at 25 with multiple sclerosis, a nerve-destroying condition that is gradually stealing his eyesight, balance, and strength. He is legally blind due to MS&#8217;s assault on his optic nerves, and his right hand is so weak that he can&#8217;t even hold a heavy book — the arm would buckle. With a tangle of sandy-brown hair and a gold stud in one earlobe, Cohen looks almost boyish when seated. Upon standing, though, he gains decades: He walks deliberately, with a cane and a decided limp, and rarely for longer than one city block. &#8220;My life has been a continuous series of what I can&#8217;t do anymore,&#8221; he says matter-of-factly. In contrast to his wife&#8217;s famously velvety voice, Cohen&#8217;s voice has a scratchy warble to it — another effect of MS.</p>
<p>For years, when poor eyesight was one of his few symptoms, Cohen hid his condition in order to protect his job as a TV-news producer. He told Vieira his secret during dinner on their second date — if his illness was going to scare her off, he has joked, &#8220;Why waste money on dessert?&#8221; She responded with empathy and fatalism. There&#8217;s no point worrying about an unknown future, she thought: &#8220;The future could be a bus hitting us tomorrow.&#8221; While they were dating and both working at CBS News, Vieira remembers, &#8220;I would get people all the time asking, &#8216;Why would you go out? He&#8217;s such a snob. I&#8217;ll walk by him, and he never acknowledges me.&#8217; I wanted to say, &#8216;My God, he can&#8217;t see you.&#8217; &#8220;</p>
<p><strong>Life after Today. &gt;&gt;</strong></p>
<p>By the late 1980s, Cohen acknowledged his worsening disease to friends and coworkers. Some celebrity journalists who got wind of the matter saw a ready-made sob story, painting Vieira as the long-suffering nursemaid to her sickly husband — a &#8220;Secret Family Tragedy,&#8221; to quote one tabloid. In his best-selling 2004 memoir, Blindsided, Cohen calls this story line &#8220;Meredith the martyr and Richard the wretched.&#8221;</p>
<p>So when Vieira, 57, left Today, she pointedly rejected reports that she was leaving to become a full-time caregiver. &#8220;There&#8217;s so much speculation in the press recently [about] &#8216;poor Meredith with her invalid husband,&#8217; and I want to set the record straight,&#8221; she said at the time. &#8220;My husband, Richard, is in good health, and that&#8217;s part of the reason I want to leave right now.… I want to be there with him, and I want to have fun.&#8221;</p>
<p>True, Cohen is probably feeling as well as he ever will, given that doctors don&#8217;t yet know how to halt the progression of his MS, let alone repair the nerve damage it has caused. But in the face of his advancing disease, how can Vieira not see herself as a full-time caregiver? The family has no aide to assist Cohen with his daily routine, in which buttoning a shirt can take as long as 40 minutes. (&#8220;Having somebody there would drive him crazy, I think,&#8221; says Vieira. &#8220;He hates hovering.&#8221;) And the youngest of their three children — each of whom grew more able to help their father as his disease progressed — left for college this past September.</p>
<p>The answer, it seems, is through force of will. Both Cohen and Vieira long ago decided that, while chronic illness might affect their life together, it wouldn&#8217;t define that life. Now, as Vieira starts a part-time gig as a correspondent for the new NBC newsmagazine Rock Center with Brian Williams — and continues her 10th year moonlighting as host of the syndicated game show Who Wants to Be a Millionaire — they are adjusting to Cohen&#8217;s increasingly uncooperative body as they have adjusted all along: with a mix of realism and denial.</p>
<p>Richard Cohen has an office in the couple&#8217;s Tuscan-style home in Irvington, New York, but every day he can manage the trip, he rides the commuter train and subway to his writing studio on Manhattan&#8217;s Upper West Side. The family could certainly afford a car service, but Cohen prefers normalcy, despite his difficulty seeing and walking. One friend says he can hear &#8220;a certain pride&#8221; in Cohen&#8217;s voice when he calls from public transit.</p>
<p><strong>Living with chronic illness. &gt;&gt;<br />
</strong><br />
In his cream-walled studio overlooking the Hudson River, Cohen writes books and columns on chronic illness, including a column for AARP The Magazine&#8217;s website. His potential audience is vast and growing. An estimated 133 million Americans have at least one chronic illness, defined as a long-term disease that is usually incurable. And that number will surely climb as the population ages. &#8220;This isn&#8217;t about &#8216;them,&#8217; &#8220;Cohen says. &#8220;It&#8217;s about &#8216;us.&#8217; &#8220;</p>
<p>Cohen&#8217;s own health history includes not only MS but two bouts with colon cancer, in 1999 and 2000, which required invasive, lifesaving surgery. But he says the emotional experience of living with a long-term condition is much the same for anyone who has one, whether it&#8217;s heart disease, diabetes, or another ongoing ailment. &#8220;There are so many different diseases, and they do different things to your body,&#8221; he says. &#8220;But the coping issues that go with these illnesses are remarkably similar.&#8221; Via personal stories and interviews with other patient-advocates, Cohen writes about how a chronic disease can challenge one&#8217;s faith in the future as well as one&#8217;s sense of self-worth. He writes about how to keep pain and frustration from poisoning relationships. &#8220;People don&#8217;t want me to tell them to take this cream or that pill,&#8221; he says. &#8220;People want to know, &#8216;How did you do it?&#8217; &#8220;</p>
<p>Cohen says his favorite coping mechanism was always denial — not necessarily of his present condition but of his future. &#8220;I hear stories about people who want to go out and buy caskets. They dig their graves prematurely,&#8221; he says. But there&#8217;s no point in losing a good today over the chance of a bad tomorrow. &#8220;I deny the certainty of possible outcomes,&#8221; he says. &#8220;It really frees you up.&#8221; Accordingly, friends say, Cohen has a hair-raising habit of crossing the street by forging straight into traffic.</p>
<p>But that bravado has sometimes had a downside for Cohen&#8217;s family, especially early on, he admits. Their eldest child, son Ben, is now 22, but once when he was 3 years old, Cohen&#8217;s creeping lack of coordination led to a terrifying moment when he accidentally bumped Ben into the gap between a standing commuter train and the station platform, sending the boy tumbling onto the tracks. Though Cohen was able to rescue the child, the chill of fear stayed with him, he wrote in Blindsided: &#8220;I do not travel anywhere in the city with a youngster in tow without replaying the videotape of that moment.&#8221;</p>
<p><strong>Talking to the kids about chronic illness. &gt;&gt;<br />
</strong><br />
Jerome Groopman, M.D., a professor at Harvard Medical School and writer for The New Yorker, says his friend Cohen&#8217;s work has value even for those not affected by chronic illness…yet. &#8220;All of us, one day, will be patients,&#8221; says Groopman. &#8220;These stories tell us that, yes, there is a potential for loss and difficulty, but on the other hand, there&#8217;s also the potential to prevail.&#8221;</p>
<p>Cohen prizes and nourishes a few close friendships, say those who know him well. &#8220;Of all my friends, more so than I, he&#8217;s the one who puts the time and effort into friendship,&#8221; says Katie Doucette, an executive coach who first met Cohen when they worked together on a 1970 New York congressional campaign. &#8220;He is the one I can count on for a call on Saturday morning to check in.&#8221; Cohen&#8217;s friends, in return, prize his cracked sense of humor. CBS radio and TV news host Charles Osgood recalls Cohen&#8217;s reaction when a viewer threatened to kill Osgood if the newsman and amateur poet continued to recite his own homey verse on the air. CBS hired a guard for Osgood; Cohen was less concerned. &#8220;Rich said that if, indeed, someone like that did shoot me, he would never be convicted,&#8221; Osgood recalls merrily, &#8221; because it&#8217;d be a justifiable homicide.&#8221;</p>
<p>Adapting to a chronic illness is a lifelong process, experts say. First, patients and families must deal with the shock and logistics of a new diagnosis, whether that means diet changes and medication for someone with diabetes or driving restrictions for someone with epilepsy.</p>
<p>Then, after an initial adjustment period, families facing chronic illness must learn to function without the disease&#8217;s monopolizing everyone&#8217;s attention. &#8220;Chronic illness has a tendency to have an insidious effect on all family dynamics,&#8221; says Barry J. Jacobs, Psy.D., author of The Emotional Survival Guide for Caregivers. &#8220;If a family isn&#8217;t careful, the disease becomes their central organizing force.&#8221;</p>
<p>At first Cohen and Vieira may have taken this caution to an extreme: They didn&#8217;t discuss Cohen&#8217;s condition with their children at all until Ben was about 7, Gabriel was 5, and Lily was 3. &#8220;We figured, oh, they&#8217;re so small, they don&#8217;t need to know this,&#8221; Vieira says. But then one night all three children saw their father plummet backward down the stairs and land on his head. They were terrified. Later that night, Ben asked his mother for answers, and she gave them. &#8220;I realized kids are intuitive; they are sensitive,&#8221; she says. &#8220;He didn&#8217;t know what it was, but he knew something wasn&#8217;t right.&#8221; From then on, MS was something the family discussed openly, though not obsessively. The parents made sure that conversation around their dinner table centered on everybody&#8217;s everyday activities: Ben&#8217;s soccer, Gabe&#8217;s baseball, Lily&#8217;s drama, and the spirited debates that naturally arose in a household of proudly stubborn individualists. Their baseball fandom tells the tale: Vieira roots for the Red Sox; Cohen, the Yankees; Ben, the Orioles; and Gabe, the Mets. Lily, now 18 — and agnostic on baseball — recalls her childhood as &#8220;completely normal.&#8221; Multiple sclerosis &#8220;definitely affects everybody in the family; it affects what you are able to do, how quickly you can do something,&#8221; she adds. &#8220;But everybody has something in their family that&#8217;s unique.&#8221;</p>
<p><strong>Adapting to chronic illness. &gt;&gt;<br />
</strong><br />
Adapting to a chronic illness doesn&#8217;t happen once, though. It must happen over and over. &#8220;If there&#8217;s anything I&#8217;ve learned,&#8221; says Cohen, &#8220;it&#8217;s that progressive diseases progress.&#8221; Some forms of MS include long periods of remission, when the patient&#8217;s symptoms can diminish or even disappear. But with Cohen&#8217;s form, called &#8220;secondary progressive,&#8221; nerve damage accumulates, leading to increasing disability. Many other chronic illnesses — chronic obstructive pulmonary disease, for example — have this same progressive trait. Each time you notice a new loss of function, Cohen says, &#8220;you just know on every level that it&#8217;s a one-way trip. You&#8217;re never going to cross back over.&#8221; And just as the patient must adjust to his or her new limitations, so must the family — while also adjusting to the changing needs of other family members, including children as they grow.</p>
<p>The most striking recent example of this in the family&#8217;s life is Cohen&#8217;s grudging use of a wheelchair in some situations. Cohen&#8217;s father and paternal grandmother both had MS, and each used a wheelchair at the end of their lives. To Cohen, the device signals an irreversible step toward the grave. But with the progression of his disease, he has grown more resigned. &#8220;He said to me a million times, &#8216;I thought I would beat this. I thought I would be the one,&#8217; &#8221; Vieira says sadly. &#8220;He&#8217;s feeling like he&#8217;s not the one.&#8221; At the recent wedding of Cohen&#8217;s niece, where long hotel corridors made walking impossible for Cohen, he reluctantly used a wheelchair to get around. &#8220;He didn&#8217;t want to do it,&#8221; Vieira remembers. &#8220;He didn&#8217;t want to get in that chair.&#8221;</p>
<p>As the last child still at home, Lily knew her father&#8217;s limitations, and she wasn&#8217;t surprised to see him in a wheelchair. But for Ben and Gabe, who had been away at college, the sight of their father in the chair was a shock. &#8220;He&#8217;d always said he&#8217;d go as long as possible without using one,&#8221; recalls Gabe, 20. &#8220;Often my dad is very good at hiding his illness, and to see him like that in public was a big change.&#8221;</p>
<p>At the end of the wedding, Cohen went upstairs, while Vieira stayed behind. &#8220;All the kids were dancing,&#8221; she remembers. &#8220;Gabe is such a sweet boy. He asked me to dance, and while we were dancing, he started crying. I just knew that he was scared. They have those moments. Those are the transitional moments that we&#8217;re having, too.&#8221;</p>
<p>In some ways the course of a chronic illness parallels the indignities of aging. Most of us, if we live long enough, will realize that we&#8217;ve driven our last car or scaled our last fence. But with chronic disease, the process is accelerated and tinged with cruelty. &#8220;As we get older, things are happening in the right time. We tend to be dealing with them with our peers,&#8221; says Rosalind Kalb, Ph.D., vice president of the Professional Resource Center at the National Multiple Sclerosis Society. &#8220;For a younger person with MS, it feels like a robbery, and it&#8217;s unfair.&#8221;</p>
<p><strong>Trying everything. &gt;&gt;<br />
</strong><br />
Anger is a natural reaction, if sometimes an irrational one. &#8220;People feel oddly responsible for their illnesses,&#8221; says Cohen. &#8220;It makes no sense, but I sometimes blame myself because I&#8217;m sick.&#8221; Expressing that anger is one way he copes. But he&#8217;s careful these days to avoid lashing out at others. It wasn&#8217;t always that way. Particularly during recuperation from cancer surgery in 2000, Cohen&#8217;s temper threatened to break the family apart. &#8220;He began to isolate himself,&#8221; Vieira told Charlie Rose in a 2004 interview. &#8220;One minute he would be quiet, and the next minute he would blow up.&#8221; She decided to call Cohen on his behavior. &#8220;After cutting him a lot of slack, I thought, &#8216;Now you are going after everything that I care about, and I&#8217;m going to fight back. [I told him] you&#8217;re not in this alone. We&#8217;re all in this boat, and it&#8217;s really scary, and you are rocking it even more.&#8217;… As selfish as I felt at the moment of saying it — because he is the one that&#8217;s suffering — I think it was the right thing to do in order to help heal us as a family.&#8221;</p>
<p>Even as MS limits him, Cohen leavens his anger with humor. Says Vieira: &#8220;He has very bad days. He&#8217;s so funny; he&#8217;ll say, &#8216;I&#8217;m in control. I hate my life, but I&#8217;m in control.&#8217; It&#8217;s good that he vents. He&#8217;s having a shitty day, and what is he going to do, pretend that he&#8217;s not? But then he&#8217;ll soldier on.&#8221;</p>
<p>Friend Doucette says Cohen handles his illness the way he handles the rest of his life. &#8220;He focuses on what he can control, and that&#8217;s where he puts his attention,&#8221; she says. Medically, that means trying every promising treatment, even though none have been shown to help his form of MS. Along with interferon and other mainstream drugs, Cohen has tried experimental treatments such as chemotherapy, as well as alternative treatments including low-intensity laser therapy. &#8220;I don&#8217;t believe in any of this stuff,&#8221; he says. &#8220;But I do it because I don&#8217;t want to ever look back and regret that I didn&#8217;t try something. Or try everything.&#8221;</p>
<p>Doucette adds that Cohen&#8217;s attitude will stand him in good stead as he ages. &#8220;I&#8217;m Richard&#8217;s age, and all of our friends are having something to deal with,&#8221; she says. &#8220;How we approach life is going to determine how we all manage aging, whether we have debilitating conditions or not.&#8221;</p>
<p>Last June wasn&#8217;t the first time Meredith Vieira gave up a plum job to make time for her family. In 1991 her career became an early flashpoint in the mommy wars when she left her reporting gig at 60 Minutes rather than work full-time after Gabe&#8217;s birth. Some feminists accused Vieira of setting back the cause of working mothers. At one party, she recalls, &#8220;this woman cornered me and said, &#8216;How can you do that? You are the face of having it all.&#8217; </p>
<p><strong>The importance of teamwork. &gt;&gt;<br />
</strong><br />
Sitting curled in a barber&#8217;s chair in her modest Millionaire dressing room, Vieira has the casual poise of a cat. She has just finished a day&#8217;s worth of taping — a week&#8217;s worth of quiz shows — and has swapped her purple skirt suit and black spike-heeled pumps for blue jeans, brown buckle clogs, and a Harvard hoodie so ratty it&#8217;s about to disintegrate: her signature look, friends say.</p>
<p>For Vieira, the decision to leave 60 Minutes was never about trailblazing, but about prioritizing. &#8220;It was about our particular family and our needs,&#8221; she says. &#8220;The rest kind of happened around me.&#8221; Still, her choice is now largely seen as a step forward for working mothers, not a step back: It helped highlight the need for more flexible, parent-friendly workplaces. And today, with her departure from daily news to a less hectic schedule, Vieira may once again be unwittingly blazing a trail for modern families, more and more of whom are struggling to incorporate chronic illness into happy family lives.</p>
<p>Calling in reinforcements, when necessary, is key to her plan. Admitting the need for help can be difficult for some caregivers, Vieira says: &#8220;They are embarrassed. They don&#8217;t want to put people out.&#8221; But she doesn&#8217;t mind asking. Sometimes when Cohen falls down at home, he can&#8217;t get up by himself — nor, at 5 foot 3 1/2, can Vieira lift him. &#8220;We had this game where I would drag him, sort of like [our dog] Jasper drags the cat. We&#8217;d laugh, because what are you going to do?&#8221; When there were teenage children at home, Vieira had helpers on hand, but now she&#8217;ll call on friends, she says. &#8220;People want to help, so when we&#8217;ve needed friends in times of any crisis, we ask. And I think it&#8217;s really important for care ­ givers not to feel that it&#8217;s all on you at any given time, because it&#8217;s not.&#8221;</p>
<p>Friends and coworkers say Vieira fosters a sense of teamwork that makes you want to help her. &#8220;Meredith likes to be part of an ensemble. She rises to her best in that setting,&#8221; says Matt Lauer, who was her Today cohost. &#8220;I can&#8217;t tell you the number of times I&#8217;d go out to an interview, come back to my BlackBerry, and the first message would be a text from Meredith saying, &#8216;Fabulous job today.&#8217; It&#8217;s very easy in this job to develop tunnel vision: &#8216;What do I have to do today?&#8217; Meredith opened up that frame of reference to, &#8216;What are we doing?&#8217; That&#8217;s contagious.&#8221;</p>
<p>And Vieira&#8217;s sense of connection extends outward into the world. &#8220;She will kiss all her fans,&#8221; says comedian Joy Behar, a friend since their days on ABC&#8217;s The View, where Vieira acted as moderator for nine years. &#8220;She kisses everybody, kisses strangers,&#8221; Behar says. &#8220;I always say that the germs are going to go all over the place, but she doesn&#8217;t care. She&#8217;s just so affectionate.&#8221;</p>
<p>After leaving Today, Vieira took last summer off. Ben was graduating from Stanford and taking a finance job in Shanghai, and Lily was graduating from high school. (Gabe majors in journalism at Northwestern University, where Lily recently enrolled.) Vieira didn&#8217;t want to miss what might be the family&#8217;s last summer together.</p>
<p><strong>Vieira&#8217;s new job. &gt;&gt;<br />
</strong><br />
Without the daily grind of morning news, which had her — and, therefore, Cohen — waking every weekday morning at 2:30 a.m., the couple were able to spend time with their kids at the Cape Cod cottage, which they bought because it&#8217;s next door to one that Cohen&#8217;s mother owns. Cohen and Vieira also traveled to China with Ben to help him move into his new apartment.</p>
<p>And Vieira contemplated leaving television completely. While at the beach, she says, &#8220;I thought I&#8217;d have a eureka moment. I really did. I thought I&#8217;d suddenly go, &#8216;Oh, I know what I want to be!&#8217; And I didn&#8217;t. I didn&#8217;t come close.&#8221; So she signed another yearlong contract with NBC, giving her time to ponder her next move. &#8220;I&#8217;m great at procrastinating,&#8221; she jokes.</p>
<p>The job calls for Vieira to report four news pieces within the year, and she&#8217;ll also cover the 2012 Olympics for the network. Along with Millionaire and a film production company she owns, she&#8217;ll be busy, but she also looks forward to having more time to travel with her husband. Vieira&#8217;s childhood friend, author Priscilla Warner, finds the plan &#8220;romantic.&#8221; &#8220;How many people our age would say, &#8216;I&#8217;m going to leave and spend a lot of time with my spouse&#8217;?&#8221; she asks. &#8220;You don&#8217;t give up a very glamorous, stimulating, exciting job to spend time with a spouse unless you have a glamorous, stimulating, exciting spouse. They both look at each other that way.&#8221;</p>
<p>When Cohen and Vieira married, they both knew they wanted children. &#8220;It came close to our reason for being together,&#8221; Cohen has written. As a third-generation MS patient, Cohen worried he might pass the poorly understood disease to his children, but doctors at the time assured him that MS was not hereditary. Today, that thinking has changed; an international consortium of researchers recently identified 57 genes thought to play a role in MS (environment is also believed to contribute). Still, while children of MS patients do have a higher risk of developing the disease, only about 3.5 percent ever do. So far, Cohen&#8217;s kids are unaffected.</p>
<p>With one child launched now and the other two in countdown mode, the couple seem to have done admirably well as parents. All three kids are gracious and self-possessed, as well as quick and clever. And although no one in the family considers Cohen&#8217;s illness a blessing, all say the experience of growing up around chronic illness has helped the children mature and develop a sense of empathy.</p>
<p><strong>Empty nesters. &gt;&gt;<br />
</strong><br />
&#8220;It poses a challenge every day, but in ways, it has made us stronger,&#8221; says Gabe. Learning to move at his father&#8217;s pace and look out for obstacles, for example, &#8220;allows us to be more patient.&#8221;</p>
<p>The couple put no pressure on the children to choose specific careers, says Ben, who works at a private equity firm but has an eye on running for office someday. His parents would be pleased if his passion led him into rewarding work, even if it was low paying, he says, though &#8220;if I said, &#8216;I want to golf every day for the rest of my life and I don&#8217;t want to do anything with it,&#8217; there&#8217;d be a moment of silence, and then my mother would hit me.&#8221;</p>
<p>Having an empty nest is a big adjustment for the couple, the family agrees. Joked Lily shortly before she left to join Gabe at Northwestern: &#8220;They keep saying they&#8217;re going to come to Chicago every week and visit us, which I&#8217;m hoping is an exaggeration.&#8221; But Cohen and Vieira seem to be enjoying the transition to couplehood and are making a point of doing as much as they can together, while they can, in a life that holds no guarantees for anyone.</p>
<p>One clear summer day, Vieira drives Cohen and a reporter into the Cape Cod town of Wellfleet for a short tour that includes a visit to its new arts center in a restored church, Preservation Hall. The family has donated funds for an elevator in the two-story building, in honor of Cohen&#8217;s parents.</p>
<p>Cohen wears blue jeans, a T-shirt bearing an ivory-billed woodpecker, and an electronic bracelike contraption that stimulates a nerve in his calf to help him walk without tripping. &#8220;It&#8217;s a very useful device,&#8221; he says. &#8220;It ought to be better known than it is.&#8221;</p>
<p>Alighting from the passenger seat of the family&#8217;s worn gray minivan, Cohen collects his cane, gains his balance, and begins to navigate toward the crosswalk that leads to the hall. Vieira walks alongside. It&#8217;s a busy day, and there&#8217;s plenty of traffic: The swoosh of cars passing nearly drowns out the sound of birds chittering in the trees.</p>
<p>At the curb, Cohen stops, then leans as if to start crossing. Vieira silently slips her hand onto her husband&#8217;s, and they wait.</a></p>
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